A couple of weeks ago I shared with you an excerpt from Kids First, Diabetes Second about diabetes burnout. This post is along those lines…

I truly feel that after all these years, diabetes has faded into the background as much as it can.

Of course it’s ever present. We check blood sugars about 10 times a day, we replace her insulin pump every three days, and she gets a new CGM sensor when the current one gives out. I fill prescriptions and jump through hoops to get what we need when we need it. I field text messages from the school nurse to answer quick questions.

Some days it’s just routine and some days it throws us for a loop.

I know that I’m not the one with diabetes and for every action that I take, my daughter is dealing with it, too. That being said, I try to shoulder as much of the burden as I can because she has her entire life ahead of her to deal with her own diabetes.

Sometimes I’m just burned out.

And it’s not the monumental things that take their toll. It’s the monotony of doing the same thing over and over and over again.

The “beep beep, beep beep” of her insulin pump telling me it needs changed every three days.

The vibration of the CGM receiver on my nightstand at two in the morning when all I want to do is sleep.

I should consider it a win that instead of four or more injections each and every day that we only have to change her pump every 3 days. I should consider it a win that I don’t have to set my alarm for the middle of the night to check on her, but can rely on her CGM to wake me.

“Enough already.”

“Shut up.”

“Okay, I hear you. I’ll get to you in 10 minutes.”

As I type this it has been 2820 days since my child’s diagnosis with type 1 diabetes. That’s seven years, eight months, and nineteen days.

It’s like Groundhog Day.

The details of the day might change and you might get better at dealing with it. But each day when you awake, your child still has diabetes.

You still have to check blood sugars.

You still have to count carbs.

You still have to give insulin.

You still have to treat lows.

You still have to combat highs.

Again.

And again.

And again.

It’s funny because I don’t think I have major diabetes burnout. It is what it is and I deal with it. But it’s the little things that sometimes irritate me to no end.

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November is Diabetes Awareness Month and you might be saying “Yeah, but diabetes is every single day.” When Diabetes Awareness Month is over, our child’s diabetes continues. Because diabetes affects every minute of every day, it’s easy for a child to get burned out. It’s even easy for the parent or caregiver to get burned out! (Lack of sleep, anyone?!) Here is an excerpt from Kids First, Diabetes Second where I discuss some signs of burn out and suggestions to deal with it.

Dealing With Burnout

Just like their caregivers, kids with diabetes are susceptible to burnout. In fact, a large percentage of teens and young adults, particularly those who have been living with type 1 for many years, hit a wall at some point. Suddenly, a once-compliant kid declares, “I don’t want to do this anymore!” which, of course, is not an option. But, who can blame them? There is no break from diabetes. A constant schedule of blood sugar checks, injections, carb counting and your well-intended concern can take its toll.

Sometimes burnout is not as blatant, and comes in the form of kids “forgetting” to check their blood sugar, or “forgetting” to bolus for a meal, which makes it harder to recognize. If your child is having erratic readings or an elevated A1c, that could be a sign of burnout. Another sign might be doing all their checks and bolusing behind closed doors.

There is really no way to avoid burnout, but if and when it happens, there are some things you can do to help:

Be understanding. Let them know that most people struggle with this disease (including you). Acknowledge how hard it is for them.

Take control. Even if your child has taken on most of his or her own care, burnout is a cry for help. It’s time to step back in with reminders and more diligent monitoring.

Change things up. If they’ve been taking injections for a long time, maybe it’s time to suggest a pump, or vice versa. Talk to a dietitian about new meal choices. Ask for your child’s input on what they’d like to change (within reason).

Never punish. Most kids with diabetes already feel somewhat punished by their diagnosis. You may only push them farther away by getting upset.

Seek help. If your child is really struggling, it’s time to talk to a therapist or counselor, particularly one that understands diabetes issues.

As I will mention in the upcoming chapter on teen issues, some older kids can also benefit from becoming a role model or mentor to younger children. It gives them an opportunity to be empowered and focus on others. Even advocacy and fundraising efforts can make kids feel more in control. Finally, keep reminding them that although diabetes has changed their lives, there are many things that haven’t changed, such as sports, friends, hobbies, college, and opportunities for the future.

Learn More

If you’d like to learn more about the book, you can read more on the Kids First, Diabetes Second book page. It’s available widely in print and as an eBook from book sellers such as Barnes & Noble, Amazon.com, and IndieBound. And if you do read it and find it to be a valuable resource, I would greatly appreciate if you could write a review on any of the online retail sites. Thanks!

Disclosure: This post contains affiliate links to booksellers.

Please remember that I never give medical advice. Ask your endocrinologist or pediatrician for advice about your own child. Make your own informed decisions for your own child.

(For several reasons, which I will reveal soon, we decided against purchasing and continuing use of the Revel and mySentry. I do feel that our experience provides valuable information, so I will continue to share our experience. These posts are not and have never been an endorsement of these products. Consult your endocrinologist or CDE for options regarding insulin pumps and continuous glucose monitors.)

Q had been having a little diabetes burnout, so I asked if she wanted to take a short break from her CGM, the only non-essential item in our arsenal, for a few days. I was going out of town for a few days, ironically to Medtronic headquarters, and figured the break would mean one less thing for my husband and parents to deal with while I was gone.

Her break actually started a couple of days before I left. That afternoon after school she announced, “I think I feel low.”

She looked down and said “Oh, I forgot I’m not wearing it (her CGM).”

In just a few weeks of using the CGM I have come to appreciate the information that the CGM provides us. It’s not so much the number that is displayed on the screen, but if there are arrows, and if there are, is there one or two and what direction are they pointing.

The next night at bedtime she was 111. But was she steady or dropping? I looked to my nightstand as I watched TV in bed and was disappointed to see the blank screen on the mySentry.

I’ve learned that I need to listen to Q when it comes to diabetes. Sometimes I have to push things, like trying out a new piece of technology to see if it will be helpful to us in her care. But sometimes I need to take a step back and ease up if she is feeling too much pressure. It’s not an option to not have her insulin pump because she needs insulin, but some days when it was time for a sensor insertion and she didn’t want to do it, I let her put it off for a day.

While we had the CGM and mySentry, it was nice to be alerted when her blood sugar was dropping over night.

In full disclosure, Medtronic provided us with the necessary devices and supplies for this two-month trial at no cost to our family. A prescription was needed from our doctor. Medtronic provided in-home training to us, as they do for all of their customers. They did not ask me to write about the products or trial and I am free to write whatever opinions I have about the experience. I am not being paid by Medtronic.

All images are copyright D-Mom Blog and D-Mom Media and may not be copied or reproduced without express written permission.

Typically Q has a positive attitude about diabetes. She attributes it to being able to do some pretty cool things like being on the radio and in the newspaper. And she’s super excited about going to diabetes camp for the first time this summer.

But when I picked her up one afternoon this week, she asked me during the drive home if she could scream. She wanted to scream about diabetes.

Not wanting a headache or a freaked out little brother, I told her that as soon as we got home she could go either into the bathroom or upstairs to her bedroom and scream as loud as she wanted.

When we got home she grabbed the mail, handed it to me, and headed upstairs.

I heard loud screams coming from behind her closed door. Then came the crying and the yelling.

“I hate diabetes! I hate diabetes!”

I let her have a few minutes to herself and then I told her brother that Q needed me and I’d be back down in a little while. I sat on her bed with her and she laid in my lap.

She told me she wished that diabetes had never been invented and that no one knew that it existed because then she wouldn’t have it.

Just last week she asked me what happened when people got diabetes before they discovered insulin. I told her truthfully that they didn’t live for very long because your body needs insulin to turn food into fuel. She said that she’s glad that she lives now and not then.

At dinner I asked her if she was happy again, to which she smiled and replied, “Yes.” I said, “Sometimes we just need to get it all out. It’s okay if you need to scream and cry and yell sometimes.”

***

Maybe she’s suffering from some good old fashioned diabetes burnout.

Maybe asking her to be open-minded about trying the CGM* is too much for her to handle at this moment in time. She goes back and forth on whether she likes it or not.

Maybe it’s her quarterly endo appointment coming up at the end of the week. She has asked several times if they are going to do a blood draw and I keep telling her I’m not sure, because I honestly don’t know if they will or they won’t. Blood draws are quite traumatic for her.

Maybe diabetes just sucks and having a positive attitude has it’s limits.

She rarely complains about diabetes, though she has every right to. So if she needs to scream and cry and yell once in a while, I think I’ll let her.